There is no country in the world, rich or poor, in which anti-stigma programmes related to mental illnesses won’t succeed if there is the will to do so and if a few basic lessons are adhered to, according to former WPA President Professor Norman Sartorius, speaking at the WPA Congress in 2016.

During his session, titled The Stigma of Mental Illness – End of the Story?, Professor Sartorius shared the lessons he has learned over thirty years as a founding member of the anti-stigma movement.

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Professor Sartorius said many programmes against stigma had been developed worldwide, including the Open the Doors programme developed by the WPA and the INDIGO programme. Major national, regional and provincial programmes had also been set up.

The most important lesson of all, he said, was that “anti-stigma programmes must start with a self-examination of those who will lead the programme.
“If their prejudices are not dealt with, the programme could lose credibility,” he said.

When selecting priorities for a programme, Professor Sartorius recommended that three criteria should be applied, namely:

Do people with mental illness and their families see this area as a problem for them?

Is it likely that the project will be a success?

Does the work require planning over the time horizon?

“For instance, in Canada, we asked patients first, ‘What is it that disturbs you the most?’
They said, ‘What really disturbs us is when a doctor or hospital treats us like dirt…’. So we went to hospitals in Calgary to observe and interview the staff. Many of the doctors weren’t aware that they were seen that way. We talked to them and tried to change their attitudes.
“Six months later, the people with mental illness said this was the first time anyone had asked them what was needed to make their lives better.”

Professor Sartorius said another key lesson when setting up anti-stigma programmes was to “Choose the one that will be successful, or else people get fed up”.
He also advised, “Do not make plans further than you can foresee, for example if there is going to be a change of government.”

While overall rules for the programme are useful, the professor emphasised that flexibility is needed to make the most of opportunities that may arise.

Further important takeaways learnt from his research were that:

The key to success is the existence of a small group of dedicated workers who will stay with the programme for at least five years, with a likeable, charismatic leader and team.

Campaigns are useful only if they are intensifications of steady, continuous work on stigma. “Isolated campaigns are likely to be experienced as useless or harmful by those most concerned. For example, a one-year campaign in Sweden failed … Programmes must carry on into the future.”

The scientific evaluation of whether the attitudes to people with mental illness have changed should rely on changes in the behaviour of all concerned.

Programmes against stigma should address, and be tailored for, well-defined groups of people. “A programme addressed to a policeman will be different from one for teachers or judges. Sharp focus is important.”

Simply providing knowledge does not reduce stigma. Additional knowledge can increase stigma because of selective perception processes. “Training in specific skills in relationships with mentally ill people should be offered.”

Professor Sartorius said it is important to bear in mind that help and support to programs often comes from unexpected sources. “There is much good will that is never used because nobody asked for it.”

When Promise co-founder Dr Manaan Kar Ray was punched in the face in 2006 by a patient with whom he believed he had a good rapport, he found himself ashamed, mentally exhausted, and anxious about doing his job.

A second incident, in which a patient smashed a glass ashtray against a wall and chased him down the corridor, exacerbated his stress.

Today, years later, he has acknowledged the assault and the subsequent reflection provided him with a different frame of reference as to how mentally ill patients viewed the use of restraints in their treatment and whether, in their eyes, this constituted unprovoked violence.

Dr Kar Ray spoke at the WPA Congress. Together with Expert by Experience Sarah Rae, he created Promise, a proactive care initiative aimed at seeking out and embracing new ideas and, in the interests of patient-centred care, working to develop compassionate and creative alternatives for the care of patients with mental illness.

This was inspired by 2013 research that found huge variation in the use of restraint across England, with one centre reporting 38 incidents and another more than 3,000. There were also concerns about the face-down, or “prone” restraint method, plus related injuries, which numbered more than 1,000 in a single year.

Kar Ray, also a consultant psychiatrist at Fulbourn Hospital in Cambridge in the UK, pointed out that the use of mechanical constraints was commonplace in Europe and the developing world, and that he was sure “we can do better than this”.

“Our vision for Promise is to promote dignity by eliminating coercion in mental health. We need to have the courage to challenge the status quo, and not accept that because things have been this way for a long time, we should carry on this way,” he told delegates attending the congress.

Promise started with five founding members, are now thirty strong, and are constantly attracting more people keen on sharing and celebrating good practice. For caregivers, Kar Ray stressed that Promise’s message was clear: “We must contain the situation to keep patients and caregivers safe. But every time we lay hands on a patient is an opportunity for us to think whether there was something better we could have done upstream, ahead of the situation developing. If we can enhance the patient experience, maybe those situations don’t necessarily have to happen in the first place,” he said.

The Cape Town Promise Charter was signed following the session, and Kar Ray said this would help raise questions here, too, about whether restraint was indeed a necessity in the care of people who are mentally ill.

“Perhaps it’s not a necessary evil. Perhaps we are just stuck in the limitations of the past. And perhaps we need to shift out of that mindset, into a future full of possibilities,” he said.

Recently my psychiatrist asked me about a romantic relationship I had been in a while ago. Before long I began telling her about all the ways I thought I had failed or fallen short. When I said that I wanted to do better at my next relationship, she told me not to say “better”, but to say “differently”. A phrase that I constantly apply to myself is “not good enough”, but my psychiatrist says one should not think of life in terms of “good or bad”, one should rather compare situations as simply “other/different”.

Good/Bad/Other

A needy sheep in a field.

The reason I have an issue with this is that if I can’t define something, or put it into a box marked “good” or “bad”, then how do I make sense of the world? How do I live up to someone’s expectations? How do I get full marks? How can I fit in and be accepted and win approval?

I told my psychiatrist that I have now been worrying and pondering whether I had really given my ex love or if I had just been needy. She replied that “it felt like love at the time”. But love can’t just be a feeling that is whatever you say it is because you want it to be so. Lusting after someone isn’t the same as loving them. Idolising someone isn’t the same as loving them. Etc.

Disillusioning definitions

The Oxford English Dictionary defines love as “a strong feeling of affection”, but I have a feeling many a married couple would rile against such a simplified synopsis of a lifetime together. As a romantic at heart, I certainly hope to get a commitment of more than “strong affection”. Or am I a fool, believing in something that may not exist?

After this conversation with my psychiatrist, I realised that I was comparing my attitude and behaviour during the relationship to the definition of love I had learnt years ago at church:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
– 1 Corinthians 13:4-8 (NIV)

Does this mean that to love someone we must be all of these things all of the time in equal measure? Can I be patient today and kind tomorrow? Can I protect a little and trust a lot? It is humanly impossible (in my humble opinion) to truly love anyone in our lives if this is what we are aiming for. But if this is not love then what is? At which point can we accept that we love each other enough? What is good enough? Or do we just realise one day that this is different and it feels like love?